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This Must Stop

The
ongoing misinterpretation
of CFS as equal and the same as Myalgic Encephalomyelitis, resulting
in wrong treatment protocols, misinformation ,endangerment of health
and lives, confusion , a lack of medically aware practitioners, a
lack of clinical understanding of the full disease and how to
medically support and treat it .

The
ongoing misrepresentation
of ME as a vague fatigue condition, treatable with CBT, GET ,
controlled with sleeping pills and pain killers, which has resulted
in the complete neglect of the most severely affected : who have
multiple physical symptoms and complex system dysfunction.

The
ongoing misdiagnosis
of ME and other possibly treatable diseases, under the vague CFS
criteria, which encompass a wide range of poorly defined and poorly
investigated illnesses -including Chronic Lyme and other rare
diseases , leaving the field wide open for psychiatry to dominate and
wrongly influence health provision.

The
fatigue
advice
currently being propagated by the NHS, leading to mismanagement
and deterioration in genuine ME sufferers.

The
ongoing potential to mistreat
ME
patients, under the banner term “CFS/ME” whose only likely option
still is a fatigue clinic with a psychosocial pathway - or no
treatment whatsoever -often the safer route, especially for the most
ill.

The
ongoing prejudice,
especially in neurology which blocks deeper investigation, including
the possibility of testing for rare diseases such as Periodic
Paralysis and Mitochondrial Disease, which could lead to possible
treatment and recognition of common symptom pathways.

The
crisis
looming :

as
the younger population get older

the
older population of Severe ME sufferers still suffering after
decades of utter neglect get older still , needing medical input
for other illnesses , without any clinical understanding of their
underlying illness

...with
still no understanding, no biomedical consultancy and no medical
expertise in ME.

All
are currently at risk from unsuitable psychiatric input and harm. A
commitment from the government and the NHS to create and see through
the provision of a biomedical service and new clinical care pathways,
especially for the most severely affected, is long overdue.

Greg & Linda Crowhurst

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